A Peek at CancerCare® (USA)

As Chief Program and Communications Officer at CancerCare® in the USA, Brian Tomlinson has a lot going on. “I oversee all the mission programs. These include education, financial assistance and all of the clinical services as well as communications,” he said.

Brian joined CancerCare in November 2013. Prior to that, he worked at the Lymphoma Research Foundation for 10 years.

Responsibilities within marketing and communications include media relations, overseeing the organisations’ website, print publications, social media, the branding for the organisation and all the general communications that the organisation develops.

“There is a very large team that supports all this work. I have 11 direct reports and then there is probably another 40 people in the department,” he said. CancerCare employs about 90 people.

CancerCare was founded 70 years ago for two reasons. The first reason was to help people pay for their cancer treatment and the second one was to help the bereaved cope with the loss of a loved one.

“Seventy years ago, CancerCare paid their first bill which was $12.88 to Memorial Sloan Kettering for cancer treatment, a lot of money in those days,” said Brian. Today, the organisation still provides financial assistance as part of its mission.

According to Brian, the three components of CancerCare’s mission – financial assistance, counselling and education programs – are what make the organisation unique.

“From the perspective of providing financial assistance, what we’re seeing in this country is that organisations are shrinking the amount of financial assistance they provide. This is a real barrier for people to get the treatment and to adhere to their treatment,” he said. Consequently, the financial assistance provided by CancerCare makes a big difference.

CancerCare is the only organisation that provides free oncology social work services.

“Last year, we received 80,000 phone calls to our HOPE line (the organisation’s call centre),” said Brian. Every call that comes in is answered by a Master’s level certified oncology social worker. Counselling services are free and are provided not only over the phone but also in face-to-face group sessions, via the internet, as well as in one-on-one and group sessions.

The education programmes provided by CancerCare are accessible in real time, i.e., as they are happening, or by means of archived podcasts.

“Because of the internet and the regular telephone, we reach people in 97 per cent of all counties in the country,” he said.

While Brian has known about CancerCare for about 12 years before joining the organisation, he was not aware of the organisation’s reach.

“For an organisation that’s based in Manhattan, our reach is very extensive,” he said. Although based in New York City, CancerCare is a national organisation.

Excellent Financial Assistance Programmes

CancerCare has a variety of financial assistance programmes available. In a given year, the organisation provides $4-5 million towards cancer treatment-related costs, such as transportation expenses, and has a co-payment assistance foundation that provides another $20 million towards treatment costs.

“There are very specific programmes to help with different things. So, each programme has guidelines that outline the different eligibility requirements for that particular programme and there is an application process,” he said.

Donors may indicate how the funds are to be used. For example, some financial assistance programmes are for certain types of cancer, some are specific to a geographic area in the USA, and some that do not have such restrictions and thus provide CancerCare with greater latitude in how to dispense the funds. For example, CancerCare has a grant that is only for residents of New York City that covers a variety of items for those undergoing treatment regardless of their diagnosis or stage of disease.

Counselling Services to Suit All Needs

Counselling services can be obtained in person at one of CancerCare’s offices in New York City, Long Island, New Jersey and Connecticut. For those unable to come to one of the organisation’s offices, counselling is available over the phone.

“If we identify somebody outside of where they can physically come to get the free counselling, we try to find them free counselling within their local community. If that isn’t possible, then we offer them the opportunity to participate in telephone counselling,” said Brian. The counselling services offered by CancerCare are not just for the patient, they are for anyone affected by the cancer diagnosis.

When seeking counselling, most are seeking psychosocial and emotional support with a large portion focusing on bereavement.

Education Programmes

The Connect Education Workshops™ run by CancerCare are one-hour sessions during which attendees can participate over the phone or online. Occasionally, the sessions may be 90 minutes in length. The sessions are led by leading experts in oncology who provide medical updates on various tumour types, both solid and liquid. There are also sessions on side-effect management as well as pertinent topics such as the Patient Protection and Affordable Care Act, commonly called the Affordable Care Act.

“These sessions are a reminder for people living with cancer, they are for those who are newly diagnosed as well as anyone who is affected by cancer,” said Brian. Updates are always provided from the major meetings such as the American Society of Clinical Oncology, American Society of Hematology and the San Antonio Breast Cancer Symposium.

In 2013, CancerCare ran 56 Connect Education Workshops and approximately 45,000 people participated in these live calls, either via phone or online. The number of people on each call varies depending on the topic.

“For the session on the Affordable Care Act, we had 3,000 people. If it’s a call looking at a lymphoma subtype like T-cell lymphoma, you might have 200 to 300 people,” said Brian.

The last 15 to 20 minutes of each workshop is devoted to answering questions. Those participating via the internet can submit questions throughout the call; those participating by phone, queue up and ask their questions. If a question isn’t answered, participants are told to send their questions to CancerCare who then gets them an answer.

The amount of time to plan these sessions varies but it usually takes a few months.

“One of the real benefits of this model for education is that while we have to secure physicians or speakers to talk at these sessions, we don’t ask them to travel, we don’t ask them to give up their weekend. All they need to do is sit in their office and have access to a phone,” said Brian.

The Connect Education Workshops are available to anyone in the USA and outside the USA.

“Anybody can dial in. So last year we had participants from 40 countries including Australia, Austria, South Africa, Saudi Arabia and Jordan,” he said.

Once the session is over, it is archived so anyone who missed it can still listen to what was presented. Sessions are available on the organisation’s website as well as through iTunes.

Support Groups

In addition to the counselling services, educational workshops and financial assistance, CancerCare also hosts a variety of support groups that are available via phone, online and in person. Each telephone support group runs three times a year and lasts for 12 weeks. Those wishing to participate have to register ahead of time as the number of participants varies based on the group topic and format. At the end of the 12 weeks if a participant is still in need of support, they may be able to participate in the next support group if there is no waiting list, or they can transition to an online support group or CancerCare helps them find a different service in their local community.

Currently, CancerCare has five telephone support groups for patients and two for caregivers and loved ones. Each telephone support group session lasts one hour.

Online support groups take place using a password-protected message board format (not live chat). These sessions are led by oncology social workers who offer support and guidance. Groups are held for 15 weeks at a time and group members must register to join. After completing the registration process, members can participate by posting in the groups 24 hours, seven days a week. In the course of a year, CancerCare runs approximately 90 online support groups.

The face-to-face group meetings take place in one of CancerCare’s offices. Topics are determined based on information gathered in CancerCare’s database. Each group has approximately 15 participants. For those living in an area where CancerCare does not have an office, the organisation then tries to connect them with a local resource.

“If we cannot do that, we encourage them to participate in one of our phone or online support groups. Basically, they will still get the help so long as they want it,” said Brian.

All social work services, whether online, group or face-to-face counselling, can be provided not only in English but also Spanish.

“Our HOPE line has Spanish-speaking social workers. We also have a translation service for languages beyond English and Spanish but this is primarily for verbal communications,” he said.

Printed Materials Available

CancerCare has approximately 90 publications listed on its website. Many of these materials go to health professionals who then disseminate them on behalf of CancerCare.

What is challenging is trying to keep the publications up-to-date, especially information pertaining to advances in therapeutic options.

“The information about coping, practical support and managing stress is a little bit more manageable as it doesn’t change so quickly over time,” Brian said.

Brian noted that Lymphoma Coalition members are more than welcome to make use of the psychosocial materials that are on the CancerCare website (http://www.cancercare.org/publications).

Congratulations to Brian and we wish you all the best in your new role. Thank you to CancerCare for the wonderful support you provide to all those affected by cancer and for sharing your resources.

 

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